If you're living with a chronic illness, you're in the right place.

Thursday, September 25, 2014

"Suffering From" or "Living With?"

6:37 AM Posted by Tiffany Taft , ,
Vernacular.  It's a powerful thing.  It also changes over time, evolving to fit the current generations' way of thinking and viewpoints.  This is generally a good thing.  In the chronic illness world, some words that were once commonly used to describe a person - like "handicapped" - have been replaced with words that are less stigmatizing or discriminatory.  Another example is the push to use "adherence" rather than "compliance" when discussing a patient's following of a prescribed medical treatment as the medical community has moved, albeit kind of slowly, away from the patriarchal model of the physician-patient relationship.

One term I still see pretty often, including  in the medical research literature, is "suffers from."  As in, patients who suffer from [insert disease name here].  There's no doubt that illness comes with periods of suffering.  But is that the right way to describe the entire experience?

An alternative that's emerged in more recent years is "living with."  So-and-so lives with lupus.  Patients living with rheumatoid arthritis.  When I write, whether it's a blog post or a scientific paper, I use this term.  I like it better.  And when I see "suffers from" my attention becomes fixated on those two words for a moment because it kind of bothers me.

Why does it bother me?  I think mostly because while suffering is part of life with chronic illness, it's not everything.  I feel like using the word suffer overshadows the other stuff; it sets an expectation that because you suffer, you cannot possibly do as much as a non-ill person.  And I know that's simply untrue.  All you have to do is look around the web, or at friends or family who live with a chronic illness, and see the great things they do in spite of their chronic illness.  Do they suffer?  Sure do.  But they live.

Maybe the word suffer pushes a button deep down in me that I can't put my finger on, but this is my reaction.  Buddha declared that life = suffering.  Everyone experiences it at various points in their life.  But for those who live without a chronic illness, they don't have the word regularly attached to a part of their identity.  

Words have a lot of power, and they get into our psyche when we hear them repeatedly over time.  Eventually they can become part of our core belief structure, which pretty much dictates how we see ourselves, the world, and other people.  Our beliefs drive our perceptions and behaviors.  It's like a percolator coffee pot, which when I was a kid was how my mom made coffee (yep, I'm old).  The water at the bottom of the pot is our core beliefs.  These move up through the coffee grounds in the middle, which are our attitudes, rules, and assumptions about life.  The coffee that bubble to the top are our automatic thoughts (and subsequent behaviors) that we display to the world.

If I see myself as someone who suffers, to me that has a negative connotation.  I much rather prefer to see myself who lives in spite of suffering, which is nowhere near a constant presence in my life.  And even on the days where there is suffering, most people with a chronic illness still get on with their day and push through because of their resilience.

I'd love to hear your thoughts on this and whether you prefer the term "lives" or "suffers" and why.

Dr. T.

Saturday, September 20, 2014

In the Spotlight: Lupus

7:24 PM Posted by Stephanie Horgan , , ,
This month to continue our Rare Disease of the Month series we are focusing on lupus. It is a mysterious illness that is often misdiagnosed and masks itself in other diagnoses. Much research is needed to improve the quality of life for lupus patients!

Lupus is a chronic autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). In patients with lupus, their bodies create autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body. Some of the common symptoms of lupus are painful joints, fever, rashes on the skin and face, sensitivity to sunlight, chest pain, ankle swelling, hair loss, and mouth ulcers.  Patients experience flares and remissions throughout the course of their illness. Lupus symptoms can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life. Some celebrities with lupus include first lady Barbara Bush and pop stars Seal, Michael Jackson, and Selena Gomez.
How Common is It?
According to the Lupus Foundation of American, at least 1.5 million Americans have lupus. More than 16,000 new cases of lupus are reported annually across the country; it is believed that 5 million people throughout the world have a form of lupus. Ninety percent of people with lupus are women, and the disease strikes mostly women of childbearing age (those who are between the ages of 15 and 44 years old). However, men, children, and teenagers develop lupus, too. Women of color are two to three times more likely to develop lupus than Caucasians. However, people of all races and ethnic groups can develop lupus.

What About Diagnosis and Treatment?
There is no one specific test for lupus and since the symptoms overlap with many other illnesses, it can take years to diagnose. According to the Lupus Initiative, patients spend an average of four years and see three physicians before their disease is correctly diagnosed. Physicians make the diagnosis based on medical history, symptoms, and blood work and ruling out other diagnoses. To diagnose lupus, a doctor should be able to find physical or laboratory evidence of the condition, such as swelling of the joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy that shows evidence of the disease.

Medications for lupus sometimes include steroids, anti-inflammatory medications, and pain relievers to help with symptoms. Antimalarials, such as hydroxychloroquine, are used to decrease inflammation for patients. There is a drug called Mycophenolate mofetil (CellCept) that slows down the immune system which is attacking itself. There is also a medication called Benlysta (belimumab) that is thought to reduce the body's ability to attack its own tissues. Antimetabolites and anti-transplant rejection drugs are another category of drugs used to treat lupus.
What about the Social and Emotional Impact? 
As with other chronic illnesses, the symptoms of lupus can be extremely frustrating and limiting for patients. Some people experience rashes on their face and hair loss; these symptoms can affect self-esteem and limit patients' desire to be social if they are receiving stares or comments. Painful joints and fatigue can prevent many day-to-day activities, which may impact social and emotional functioning. Patients with lupus are often very sensitive to sunlight, which can cause flares. This limits the time they are able to enjoy time outside. The unpredictability of flares can be overwhelming, but there are several self-care strategies to help patients be proactive about their illness. Gentle low-impact exercise can be helpful, as well as getting a gentle massage. Stress management techniques like mindfulness, yoga, and meditation can be helpful in decreasing any flares that occur due to stress. Seeking help from a therapist who specializes in chronic illness can also help to normalize the impact of the illness and deal with any emotional effects of it.

Helpful Resources
Lupus Foundation of America 
Includes resources about financial assistance, finding a clinical trial, educational programs, legal issues, caregiving support, message boards, and local walks to raise money for Lupus research

Lupus Research Institute
Learn about the latest research and treatments for lupus, and how you can advocate for finding a cure

The Lupus Initiative
Free resources to learn more about how to address the persistent gaps between the lupus-related health status of minorities and non-minorities, women and men, and those above and below the poverty line

The US in Lupus
This site has a mobile app to track symptoms, stories from other patients, and articles on support.

Monday, September 1, 2014

How Do We Treat PTSD?

6:51 AM Posted by Tiffany Taft , ,
A few weeks ago, we had a guest post from Jessica Naftaly on post-traumatic stress disorder (PTSD) in people living with chronic medical illnesses.  If you haven't read it, go check it out.  I wanted to follow up on that post with some information on what we can do to help someone experiencing PTSD.  We've come a long way in the psychology world in this area, thankfully, and there are some really good treatments available.

PTSD isn't a new phenomenon. In fact, I'd venture to guess PTSD has been around as long as people have been around, just called different things and, frankly, poorly understood.  In the U.S. we can go back to World War I for the first real efforts to start to understand and treat PTSD, or "Shell Shock" as it was known then.  The military spearheaded how to identify people who were more susceptible to shell shock with the help of psychologists and psychiatrists, however the treatments remained poor.  Over time, and unfortunately with more wars, our understanding of PTSD evolved as more veterans suffered for years, even decades, with its symptoms.

I did my year-long internship at a large Veteran's Administration (VA) hospital in Chicago so I saw a lot of people with PTSD.  I remember meeting a group of veterans from the Vietnam War for the first time, and all of them had pretty active PTSD symptoms.  At first I thought to myself "well Vietnam wasn't that long ago (this was 2008)."  Then I did the math and realized we were talking about 40 years of PTSD.  Unfortunately, we had failed these men.  And it took these failures to really push PTSD treatments to where they are today.

So, how do we treat PTSD today?  There are 3 main approaches that are supported by research and evidence that I'll talk about.

Thanks to pioneering research by Dr. Edna Foa, we understand that the key to treating PTSD is exposure to the trauma, which allows our brains to reprocess what happened to us.  Dr. Foa worked with rape survivors and developed something called Prolonged Exposure Therapy (more below), and was named by Time Magazine as one of the 100 most influential people in the world in 2010. For someone living with PTSD, they go to great lengths to avoid thinking about what happened because, well it's so friggin' painful and scary.  So, yes, what I'm saying is the treatment for PTSD is to make you think about it.  A lot.

No, I'm not a sadist.  I promise.

The way I explain traumatic memories to clients with PTSD is this:  Your whole life is written in your brain like a storybook.  There's a narrative there that makes sense, full of all sorts of plots and timelines, happy memories, sad memories, boring memories.  It flows and makes sense.  When a major trauma happens, sometimes that event (or, often times in chronic illness, series of events) is so horrible that the pages get removed from the storybook.  Our brain stores it differently so that it doesn't fit neatly in with the rest of the book.  The symptoms of PTSD, like nightmares and flashbacks, are our brain's attempt to put those pages back where they belong but they fail to do so.

This is why we have to retell the story, in a controlled way, so the pages can get put back.  You will learn that you do not have to be afraid of your memories.  The first 2 treatments below do this.
  1. Cognitive Processing Therapy (CPT):  CPT works by giving you a new way to handle the distressing thoughts that come with PTSD, and to gain an understanding of these events. CPT helps you learn how going through a trauma changed the way you look at the world, yourself, and others. The way we think and look at things directly affects how we feel and act.  The goals of CPT are to learn about your specific PTSD symptoms, become aware of your thoughts and feelings related to the trauma and how they affect you today, learn skills to change your thoughts and calm yourself when you're feeling really emotional, and evaluate your beliefs about safety, trust, control, self-esteem, other people, and relationships which often change after trauma.  The treatment involves meeting with a therapist trained in CPT and doing several writing exercises on your own that you'll bring to your sessions.  These writing exercises include writing, in detail, about your trauma.
  2. Prolonged Exposure Therapy (PET): PET works in a very similar way to CPT by helping you approach trauma-related thoughts, feelings, and situations that you have been avoiding due to the distress they cause. Repeated exposure to these thoughts, feelings, and situations helps reduce the power they have to cause distress.  It also has four main parts:  education about PTSD and the treatment, breathing exercises that help you relax, placing yourself in real-world situations that are safe, but which you may have been avoiding because they are related to the trauma, to help your trauma-related distress go down over time, and talking about your trauma memory over and over with your therapist to help you get more control of your thoughts and feelings about the trauma.
  3. Medication: Unfortunately, there aren't many medications that work well for PTSD so, in my opinion, they should be used sparingly and appropriately.  The current evidence base is strongest for the selective serotonin reuptake inhibitors (SSRIs), and currently only sertraline (Zoloft) and paroxetine (Paxil) are approved by the Food and Drug Administration (FDA) for PTSD. All other medication uses are off label, though there are differing levels of evidence supporting their use.  More details can be read here.
These treatments are effective for most people, but they're difficult.  People tend to drop out because they're being asked to face memories that they've done their best to avoid for months or years, and that's just overwhelming.  But if a person can stick with it, the benefits can be incredible and give them their life back.  

It's critical if you're living with PTSD and are considering these treatments that you find a therapist who is trained in them.  You really shouldn't try to do them on your own, either.  There are other treatments out there for PTSD, but their effectiveness remains unclear.  CPT and PET have the most research and data from real-world use as of today.  New treatments that involve virtual reality and neurofeedback are being investigated and may offer a new level of PTSD treatment in the near future.

More great information can be found at the National Center for PTSD.

Dr. T